Around the Web

Here's what caught my attention around the web this week.

A paradigm shift.

I'm not sure I could fully adopt this woman's way of thinking, but I do think it's important to examine how we talk about disease. Are we battling? Are we warriors? Or are those of us diagnosed with cancer just doing the best we can with some shitty luck? 

One woman I know talks about shifting our thinking away from "fighting cancer" and more toward "creating health." Now that is an idea I can get behind. What about you? What words do you use to talk about cancer?

Why #BCSM is my favorite hashtag.

Most Monday nights, I'm not able to participate in the Tweet chat sessions accompanied by the #bcsm hashtag. But I still use it as a call signal when I'm feeling at my lowest, or when I have news to share, or when I want to talk to someone who knows exactly what it feels like to be buzzing on steroids at one in the morning. Someone always answers the call. If you haven't checked out the chats, you really, really should.

Joan Lunden has breast cancer.

I wish her the absolute best. I pray chemo is as easy as possible for her. I hope she uses her platform as a celebrity and journalist to shed some light on this disease -- to educate, not just bring "awareness."

A possible new way to fight some breast cancers

"[Researchers] found that women were 4.4 times more likely to have a cancer recurrence during tamoxifen treatment when their main tumor had a high ratio (2:1 or greater) of androgen receptor-positive cells to estrogen receptor-positive cells."

The 3D news that was everywhere this week

When I was first diagnosed, I was asked to volunteer for a 3D mammogram to help further research into whether such tools were beneficial. I don't know if my own 45-minute, highly uncomfortable session added anything to this particular study, but I'd like to think I helped a little. Now if only they could figure out a way to PREVENT or CURE breast cancers, instead of just seeing them.

On that note, some researchers are looking at immunotherapy for treating metastatic breast cancer, thank you and amen.

This: "Unlike maintenance chemotherapy, with its associated cumulative toxicity, a therapeutic vaccine may offer clinical benefit with few adverse effects. The hope and promise is that women with MBC who mount an antibody response to a vaccine may experience significantly longer median survival and a better quality of life."

And, I just realized this article was from 2013, so here's hoping those scientists have made some significant progress since then! I'll see what I can find out for next week's round-up.

My Summer Plans

I told you I'm growing out my hair, but the truth is I've set an even loftier goal for this summer: to finish the first draft of my book. In the last few weeks, I've also been writing about my experiences for a couple of other blogs, which I hope to do more of going forward. For now, you can find those posts here and here.

As for the book, my agent and I are buckling down. I've drafted my proposal, my bio, my intro to potential publishers, and maybe 2/3 of the actual book itself. It is a ROUGH 2/3, to be sure, but it is written. I've just Got. To. Finish. This. Thing.

I'm feeling very inspired. A couple of weeks ago I finished reading Wild by Cheryl Strayed and almost immediately started at the beginning again. Reading this book feels somewhat like the trajectory I've had writing my own; it took me a half-dozen starts and stops over the last couple of years to get past the first chapter, but once I got into the meat of it, I could hardly think of anything else. (If you haven't read Wild, I highly recommend it.)

And so it is with this project of mine. I can hardly think of anything else lately. Maybe my book won't get read, but maybe it will. Maybe it will help one person. Maybe a few dozen. Maybe my story will resonate and reverberate and be made into a movie starring Natalie Portman (Chris likes her and she's willing to go bald). No matter what happens, I feel compelled to get my story out in the world, to fill in the many blanks that weren't quite right for blog posts or Facebook status updates over the last three years. 

Some people say writing a book is like giving birth. If that's the case, I'm feeling a strong urge to push right now. My guess is there will be a lot more work than I can even imagine possible, but my hope is that I'll have something incredible to show for it when I'm done. I can't wait to share that with you guys. 

If I'm spotty here over the summer, it's because I'm pouring my creative efforts into birthing this book. With no changes in my health (hallelujah), I've been kind of feeling like I am just updating you on life raising a toddler anyway, and there are plenty of blogs for that. I will update here when I can, or if anything changes, or if Quinn does something particularly adorable. Probably when I finish walking 39.3 miles next month. Certainly when I have my next scan in August. And absolutely when I hand over my manuscript to my agent to see if he can find it a home. 

Around the Web

Here's what I found this week. Have something you'd like me to feature here? Please leave a note in the comments or send me an email.

Reducing the risk of recurrence in hormone-sensitive cancers

"A new treatment option is more effective than tamoxifen at preventing a return of breast cancer in young women, according to the results of two international trials."

Still requires shutting down ovaries, unfortunately.

And another promising option for post-menopausal breast cancer patients

"The inexpensive anti-malarial drug hydroxychloroquine (HCQ) reverses resistance to tamoxifen, a widely used breast cancer drug, in mice."

Anti-malarial? Really?

(Thanks to my friend Andrea for this one.)

At least one insurance company using incentive program to "reign in costs"

Would you want your doctor receiving financial incentives from an insurance company for how he or she prescribes the medicine you'll receive? Would you care? In an era of more and more individualized medicine, I'd be concerned the quality of care was at risk. But maybe that's just me?

(Thanks to my friend Andrea for this one, too.)

Decoding the role immune cells have on metastases

"Normally, macrophages -- chubby cells with a big mouth-like orifice -- are friends, not foe. They gobble up dead tumor cells and virtually any kind of debris, including infectious organisms. Picture the old Pac-Man video game that consumed dots.

But macrophages, Egeblad said, also send signals in the vast communication network of the body allowing cells to "talk" to each other.

"What we found is that when you give chemotherapy, the macrophages come in and clean up all these dead cells but they are also sending signals to the [tumor] cells that are not killed in the first round of chemo. And those signals are making it easier for the tumor to bounce back after chemo," she said."

I had no idea cells could be chubby.

Immunotherapy is all the rage lately

"A promising new study from Mayo Clinic, in conjunction with Caris Life Sciences, points to immunotherapy as a possible treatment option for patients with the difficult-to-treat triple negative breast cancer mutation."

I sat in on a Twitter chat (tweet chat?) earlier this week that focused on immunotherapy and where it is headed. Big things are happening, if you believe all the scientists. All of us patients are trying to temper our excitement with the reality that many of these amazing/brilliant/promising results are still in the very early trial stages. But I am staying tuned...

A friend's cousin and her beautiful love story

Worth the read AND the incredible photos taken by my friend Kristi's wildly talented sister Joy Marie.

Flying Solo

This last week has been rough.


Chris has been out of town, analyzing soil samples twelve hours a day in a lab six floors underground somewhere in Minneapolis. Quinn and I are on our own. Quinn has woken me up most mornings by kicking me shortly after six a.m., moaning and groaning and whining that he wants "bres-feth". Over and over I remind him he has to stop whining, to say please, to not kick me, to no avail.

Mid-week, I told him he could go pour his own cereal and watch a show on his iPad. He responded, "I'm not old enough, mommy." Then: "Get me a waffle."

Me: "Say please."

Q: "Waffle please." Then, when we'd gotten to the kitchen, "I need green juice!"

Me: "Say please."

Q: "Please I need green juice?" he asked. Then he whined, "I don't want that plate! No! The orange one!" He was near hysterics over a damn purple plate. I hadn't even had coffee yet.

Me: "Say please, Quinn." I could feel myself growing more aggravated. I was ready to throw all of his plastic plates away, but I restrained myself. I mean, look at this face. You couldn't stay mad for long, either.



He ate two bites of waffle and told me he was done. I couldn't tell if my eyes were burning because they were so tired or because I was about to cry. Over a three-year-old and his waffle, for chrissake.

This morning, he didn't want to pick out an outfit, but didn't like the one I picked. He wanted to take his brown blanket to school and wrapped himself in it like he is a superhero, but then he didn't want it wrapped around his body in the carseat. He was mad that I couldn't fix it while I drove.

And when I dropped him off, he clung to me like he hasn't in a very long time, begging me to play with him just a little bit more, sobbing when I told him I had to leave because I have a dentist appointment and a doctor's appointment today. My heart ached. I couldn't wait to get a little break after an incredibly rough day yesterday, but when the time came to leave him, all I wanted to do was hold him and apologize for my impatience, my shortcomings as a Lego builder, my lack of energy this week.

I cried to Chris on the phone yesterday (Happy Father's Day!) because I'd seen a little girl in Quinn's class writing her OWN NAME on a piece of artwork last week. She'd drawn a picture of her mom in a red dress, and it looked like an actual mom in a red dress. Quinn scribbles in green and calls it a map to our house. I can't even take the time to get him to hold a crayon correctly, let alone teach him how to write letters. I'm pretty sure he thinks the alphabet goes "A, B, C, Q, R, S, W, X, Y and Z."

I try so hard not to compare, and maybe I wouldn't if I knew what was normal, what it was like to raise a child outside of cancer treatments, what it was like to have energy more than fifty percent of the time.

I had chemo last Monday, the day after Chris left for Minnesota. That night, I was up late because of the steroids, but the rest of the week I went to bed at the same time as Quinn: 8:15 or so. I got more sleep last week than I have in months, and I was still dragging most days. My head felt like it was in a vice, either from the chemo or the triple-digit heat, I'm not sure. Quinn and I watched an excessive amount of television, including "How to Train Your Dragon" at least three times.

Chris is home next week for a week, then off again for a couple of weeks in Kenya on the same day I have my next round of chemo. I was so panicked at the idea of another week like this last one, I called my mom yesterday and begged her to come visit the first week of July.

As Quinn wanted me to know as he clung to my leg this morning, sometimes you just need your mommy.

Around the Web

Here's what caught my attention around the web this week. And thanks again to my lovely survivor friend Kathryn for sending links along!

I'm afraid to see this movie, but I may read the book. Have you?

My husband says I come from a long line of criers. I think a good cry (and good literature) is worth it sometimes. I'd love to hear your thoughts, though.

Here's hoping my killer T cells are abundant.

"The Cancer Research UK study found that when these immune cells were present, survival improved for women with ER-negative and ER-positive HER2-postive breast cancer."

Advances in immunotherapy for treating melanoma show promise.

"“Just a few years ago, median survival for patients diagnosed with advanced melanoma was as little as a year or less, and only approximately 20-25 percent survived two years, so it’s truly remarkable that we’re seeing a median survival over three years in this trial,” said lead study author Mario Sznol, MD, a professor of medical oncology at Yale School of Medicine in New Haven, CT."

And huge advances for treating a common form of leukemia, too.

"ASCO chose to highlight the findings because [this drug] is already approved by the Food and Drug Administration for use against a different blood cancer called mantle cell lymphoma, as well as for chronic lymphocytic leukemia.

That means cancer specialists can start offering it to their patients right away."

I love news like this.

Promising early stage results for drugs that fight ALL THE CANCERS.

"The drugs are already being used in clinical trials and have been granted Breakthrough Therapy status by the Federal Drugs Agency in the US, which means their development has been speeded up.

They could be available within just a few years if approved by European regulators and the National Institute of Clinical Excellence."

Have I mentioned I love news like this?

A reminder to eat more greens.

Sadly, this argument does not work on my 3-year-old (although he doesn't care for most red meat, either).

Is breast cancer a chronic disease? For some, thankfully, yes. 

It's not chronic for enough of us, the way diabetes or heart disease is, in part because the side effects of cancer treatment can be crippling for many. But we are making strides, and I maintain hope that more significant advances are on the horizon. I'm banking on it.

Starting Point

Since I mentioned my new plan for my hair yesterday, I figured I should give you guys a starting point. This was me after my last haircut, in mid-May. I'm stepping up my intake of Biotin and hoping my hair will be long enough to donate sometime before Quinn starts kindergarten.

Aaaaand my heart is having major palpitations at that last sentence. Holy shit, kindergarten is not that far off.

Hair Update, and a Plan

The last time I mentioned my hair here, it was February and I was bidding farewell to my winter mullet. Not much has changed with my hair since then. I've purposely kept it short, enjoying the relative easiness of this style and not having any hair on my neck when the forecast looks like this:

It goes on like that ad infinitum, except the lows start creeping up into the 90s and then we all spontaneously combust. I literally found a fried egg on our back deck the other day. I assume it was a bird that committed suicide rather than be born in Phoenix right now? On that note, I should probably let the cat in for the night.

I got a text from my friend Alana the other day, letting me know that her daughter, my goddaughter Grace, was in the process of cutting off several inches of hair for Locks of Love in my honor. Grace is nine. Hair is abundantly important to most pre-teen girls. This was no small thing, I realized. And my eyes immediately welled up with tears, I was so moved by this beautiful child's gesture.

Inspired by Grace, I made a decision that I'd try to grow my hair out to do the same again. It's what I did with my hair when I initially cut it off for chemo nearly three years ago, and it might take me another three years to grow it long enough to donate enough to help make someone's wig. But it is a small thing I can do (assuming the stars align and remission stays with me).

Between now and then, get ready for the awkward phase between pixie and bob. I have a feeling I'm going to be investing in buckets of bobby pins in the coming months. I'll keep you all posted through it all, of course.

Training Walks

It's hard to train for endurance when the temperature is already in the 90s by 7 a.m.

I've walked 39.3 miles before, so I'm not terribly worried about my Avon Walk next month, but I'm also prone to being delusional/overly optimistic/a glutton for punishment. Still, I'd like to get a couple of distance walks in in the next few weeks, if only to break in my (yet to be purchased) shoes. You know, to remind my hips and knees and toenails what it's like to plod on and on and on for hours on end.

Chris has a couple of work trips coming up, though, so it will be just Quinn and me for five out of the next six weeks. And, yeah, Quinn has school a couple of days a week, but I am not testing my ability to not melt here. By the time he's in school, it's already in the triple digits. No thank you.

Bottom line: unless we drive to California and find a babysitter, I think my outdoor training walks have come to a close for the summer. Here are some photos of my walk (okay, hike) this morning. Squaw Peak, I'm gonna miss you.

Around the Web

What sparked my interest this week on the Internet.

These portraits aren't new, but they're new to me. And I LOVE them.

$9.5 Million for eradicating breast cancer? I might become a golf fan.

"It’s been 21 years since Skinner lost her dear friend, fellow LPGA player Heather Farr, whose breast cancer was misdiagnosed and ignored at age 24. Skinner has honored her memory by helping raise $9.5 million for breast cancer initiatives."

There IS life after cancer for more and more of us.

'"We used to think of the paradigm as cancer was something that we had, we treated it, we either got better or we didn't," notes Oeffinger. "And now that we have so many different, effective therapies, even patients with advanced cancer -- metastatic cancer -- they can be treated periodically again with different types of chemotherapy or targeted therapies that are coming, radiation, surgery, other effective therapies for keeping them doing well and keeping them active."'

Stopping the spread of breast cancer cells? Yes, please.

"Working with human breast cancer cells and mouse models of breast cancer, scientists identified a new protein that plays a key role in reprogramming cancer cells to migrate and invade other organs. When that protein is removed from cancer cells in mice, the ability of the cells to metastasize to the lung is dramatically decreased."

New treatment regimen could save fertility AND increase survival. Win/win.

'"We found that, in addition to reducing the risk of early menopause, and all of the symptoms that go along with menopause, goserelin was very safe and may even improve survival. I think these findings are going to change our clinical practice."'

This may be my excuse to go to Italy next summer.

"The Octava Pink test is now available in Israel and Italy, and is undergoing clinical trials to receive US Food and Drug Administration approval.

This is the first blood test ever that can reveal cancer, not merely markers that might indicate cancer or something else. Its innovation also lies in its examination of antibodies in the blood to pinpoint this specific cancer."


As always, if you have anything you'd like me to link to here, please email me at jen (dot) campisano (at) gmail or leave a note in the comments.

Back to Earth

As we were driving the two hours north through the pouring rain from Duck Key to Miami on Monday morning, Quinn asked us where we were going. 

"We're going home," I said. "To our house in Phoenix."

"Oh," he responded. "We're going back to Earth?" 

I laughed, but it does feel like we landed with a thud squarely back on planet Earth Monday night. We woke up yesterday morning to a conversation with our contractor about replacing the chipped countertop in our new mother-in-law suite, to an empty refrigerator, to Quinn's jet-lag at 5:15 a.m., to ONE HUNDRED ELEVEN DEGREE TEMPERATURES. Way to welcome us home, Phoenix.

We were in the Keys for two of my best friends' wedding, a couple of people I've known since I was seventeen and we were all freshmen at Hopkins together. A couple who finally -- FINALLY -- realized they were more than best friends and finally -- FINALLY -- got engaged at my brother's house in Idaho last winter. So, this was also in part a college reunion, albeit in a locale a teensy bit prettier than Baltimore.

 

Chris and I got to have our first date night in months (months!), even if it meant paying exorbitant resort-priced babysitter fees. In my next life, I'm going to spend my twenties on an island making millions watching movies while other peoples' kids sleep upstairs. But it was worth it. We needed it.

And if we thought Quinn was a water baby before, this trip just solidified that notion. We could not get him out of the water for more than five minutes during the day -- not to eat more than a bite or two of food, not to take more than a sip of a virgin strawberry daiquiri, barely to go home to sleep at night. Our saving grace was that we were sharing a villa with another family whose two girls are just older and just younger than Quinn, and peer pressure to eat dinner/brush teeth/wash the sand out of your hair works wonders. The kid is stubborn. No idea where he gets that.

We're all having a rough time adjusting to being back on planet Earth, back from island time and planet Florida and time with some of the best people I know, these friends who've been my friends for nearly two decades and who I don't see often enough even when I see them at three out of four weddings in two months. Cancer has amplified this point: there never seems to be enough time.

Congratulations, Beth and Shanon. The weekend was as beautiful as you two are. As an added bonus, you finally -- FINALLY -- got Quinn to nap, he was so worn out yesterday. I owe you for that.